Friday, July 16, 2010

In three days we hit our "2 month" mark since transplant! Where has the time gone? I'm sorry I haven't been as diligent at keeping up the blog. You would think that I would have things under control by now and things would be slower-- not true!! In fact, it seems like life is crazier now than ever.

Matthew was scheduled to have a biopsy today. However, yesterday afternoon it was cancelled due to the start of Matthew's cold. I have no idea how I am going to keep Matthew healthy when his little brother is Luke! Luke is a germ magnet. He seems to pick up anything and everything he's been exposed to. The fact that he picks his nose, licks his hands, sucks on his shirt, etc etc. probably doesn't help his ability to stay healthy either. He is also my rebel. He puts on a mask when asked but as soon as I turn my back he "loses it" or "it falls off." Joshua is the opposite. He is the most diligent hand sanitizer and mask wearer in the family. One morning he reminded Luke that he needed to put on a mask and Luke exclaimed "I like germs! and I like to get sick!" If anybody has any ideas on how in the world I should deal with this obstacle I would welcome any ideas! In the meantime, we are holding our breath praying that Matthew can stay healthy enough to avoid another hospitalization. I think the 14 different anti-virals and antibiotics he is taking as a prophylaxis are definitely helping provide some defense so far.

Matthew still continues to struggle with eating. We have literally tried everything in the book to get him to eat and none of it works. I think for Matthew it's a control issue. He may not be able to control a lot of things in his life, but he can control what he puts in his mouth. Besides, he is taking a lot of nasty medicines and has developed a bad aversion to any food. He currently has an NG tube which we give him nutrition through at each meal and then continuously at night. Sometimes the NG tube's cap comes off and it acts as a suction emptying the contents of his stomach onto my floor. It's pretty gross. I just don't think NG tubes and active toddlers where meant to go together..... EVER! The transplant team is pushing towards having a GI doctor place a "G" tube in the near future. They think his eating issues will be long term and they favor a "G" tube over an NG tube for longer term use. Placing the tube will be an overnight procedure which should happen soon.

Other than that, Matthew is doing great!!! Seeing Matthew happy and playing makes every second of all of this worth it! Thanks so much to everybody for all your love and continued support. We are grateful for each and every one of you!

3 comments:

  1. Hey Chrissy! I am glad things continue to improve. I am so sorry about your other don and his "germ"affections. That must be so hard. You are so strong! Hey I need you to call or text me your number again. Remember that day we talked? I was going to slc to get my new phone. Well,.... I got it but in the process I lost all my recent contacts and numbers. I have had dime time the last few weeks and have wanted to finish our conversation. :) anyway it was SO good to talk to you! I am anxious to connect again so call or text me -k-
    Xo

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  2. Try a good sanitary habit board for the boys. reward them for washing their hands, masks etc, for points and when they get so many they can redeem them for a prize, outing. It works with brittany for animal care and chores!

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  3. Matt & Chrissy,
    I am Amy Saville the mother of the family you wrote the letter to through Dave McPherson. You truly touched my heart with that letter thank you so much for sharing your gratitude for your donor family with us. I'm currently waiting to hear from our Donor Coordinator for information on our recipient families. I miss my baby so very much but couldn't be prouder of him for saving a life. If you'd like to follow our blog it is at da.savillefamily.org
    Thank You Again I will probably continue to follow your blog if that is ok, it brings such peace to see so many miracle happening around us in our time of grief.

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